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I don’t think it’s a coincidence, that so recently after Benjamin’s latest hospital stay, I read this post by a nurse blogger I’ve come to respect…

In light of that, I want to share how much the nurses meant during our last hospital stay.

(Quick Background: We spent New Year’s Eve in the Emergency Room in Carlisle, Pennsylvania, then were transferred to Hershey so that Benjamin could be admitted.)

We had three nurses throughout the course of our stay- the day nurse, Lauren, and two night nurses, Katie and Beth. Each of them, in their own way, made me feel at home.

Lauren, our day nurse, answered our questions and explained details to help us understand why certain things were being done. I really appreciate that.

I’ve had certain medical professionals (only a few), who walk in, tell me something about our health, then walk out and don’t explain anything. I’m thankful for the majority, who have not done that. I felt that as a nurse, Lauren went out of her way to explain things to us.

On the last day there, Lauren told us that she prays for her patients when she goes home. How encouraging.

She said that the first night Benjamin was in the hospital, they were considering moving him to ICU to put him on the vent. At the time, we knew he was in bad shape, but we didn’t know how bad. That first night, Lauren had told us that they were decreasing his oxygen halfway, to see how he would do.

The day we were discharged, she told us that she had been really nervous about carrying out that decision, that she prayed for us when she went home, and she was so excited to see that he had improved when she came back.

Then there was the first night nurse Katie.

Honestly, I don’t remember exactly what it was about her that I liked (I was half-asleep), but I remember that she made me feel at ease with the fact she was caring for my baby that night.

And the last night nurse, Beth.

The minute she walked in, she brightened the room. She talked to Benjamin and played with him like he was her own son. She made him smile while she checked his vitals (granted, no one could make him smile the first day). Later I found out she had a teenage son, and that she’s had some very hard times herself.

I’ve learned a few things throughout our hospital stays:

1) The nurses are the ones who are with you throughout the day/night; the ones who do everything you need – from setting up the IV’s/oxygen and giving medicine to bringing you extra blankets, and replacing leads because the baby pulled them off – again. Honesty, they do more than they should have to do (we can get ourselves water and tissues, we just need to know where they are).

2) Some nurses make you more comfortable than others. But if you’re kind to them, sometimes you’ll make friends even with those who don’t seem as friendly at first. After all, there may be cultural differences, plus you never know what other stresses they’re dealing with.

3) They work harder than you’ll ever know, until you spend some time in a hospital. Even then, we probably see half of what they do.

So to all my nurse friends, and the nurses out there who work hard every day, receiving more complaints than thanks-

your job does make a difference. And I want to thank you for what you do.

Dr. Arteaga-Solis explained that he works internationally with cases of rare conditions. (So this is rare, ha). He had been in touch with the parents of a child in another country who also had TEF, and they didn’t know anyone else with this condition.

He asked if we would be willing to communicate with them. Of course we are thrilled to communicate with parents in a similar situation.

About an hour later – sooner than expected – Benjamin’s TEF surgeon came out.

Dr. Middlesworth explained that the first scope he sent down Benjamin’s esophagus – which was about the thickness of a stethoscope tube (or less)- would not pass through the narrowest part.

Part of the reason for the procedure was that Benjamin had a stricture – a narrowing that was not allowing much food to pass through.

They then sent a wire through the narrowing with a cylindrical balloon, and stretched the esophagus to widen it. It was less than 6 mm wide at the narrow point (about the thickness of a pencil), and they stretched it to 12 mm wide.

Image of stricture the thin line is the wire, thick part is balloon they passed through

No wonder he could only eat applesauce, watered down purees and milk without any problems.

We had tried other things (including humus and veggie straws) that he either choked or couldn’t keep down.

Anyway we’re so thankful to be in a place where they could find these problems and correct them.

Dr. Middlesworth had also planned to do a biopsy to check how he was doing with acid reflux, but he decided it was too many procedures to do at once and wouldn’t change enough to make it worthwhile. We appreciated his consideration.

Side note – we really like Dr. Middlesworth. He is a gentle, grandfatherly type man, who is very considerate of us as parents. But he became even “cooler” in my mind when he was reviewing this last operation with us – first his cell phone went off and the ringtone was a barking dog, ha. Then he drew a picture on his scrubs pant leg to help us understand the difference between the LMA and the other scope they had used. We should’ve taken a picture of the drawing.

Eating Veggie Straws A Couple Days After Procedure

Did the procedures help?

When you’re considering sending your son under anesthesia, and all the risks that go along with putting tubes down his throat, obviously you want to know that the benefit is higher than the risk.

(Of course, once they realized he had a stricture, the procedure was no longer optional. Originally the plan was only to look at how he was doing, but they had to widen his esophagus for him to eat.)

An x-ray was done in the recovery room, which determined that there were no “full thickness injury” or esophageal perforations (tears that would need surgery to correct).

Last night, the day after Benjamin’s procedure, he ate some pureed spinach that was slightly chunkier than before- he ate a lot! And he ate it much faster! (Five seconds instead of fifteen seconds to get through one bite.)

Then, as usual, he started crying and grabbing for my food. We cut up some of the gluten-free noodles and let him try those. He did great! 🙂

I’m still nervous to give him too much at once, but we are now working him up to foods that are more chunky and solid.

When we walked into the waiting room, there were already a few toddlers and children in the hospital tiger “PJ’s.” It was so cute and pitiful at the same time. The hospital does a great job of creating a festive atmosphere, and the staff were all very kind.

After the nurse took Benjamin’s vitals and gathered info on him, we met with the specialists who would perform the procedure.

We spoke with the doctors who would do the bronchoscopy, then spoke with Benjamin’s TEF surgeon, and then the anesthesiologist.

This time, the staff allowed me and Jason to enter the operating room and stay with Benjamin until the anesthesia kicked in.

It is still sweet to watch Jason comforting his son, and still hard to leave your baby there by himself. Everyone is so kind and thoughtful, though.

It helped that this time we were with him, both when he went to sleep and when he woke up in the recovery room.

With daddy in recovery room

Benjamin had several procedures scheduled at the same time, so that he would only have to undergo anesthesia once.

Technically, they are only considered two procedures (a bronchoscopy and an endoscopy with dilation), but there were multiple parts to them.

He was scheduled to be in the operating room for two hours, but each doctor planned to come out and tell us the results when his part was over.

The bronchoscopy portion was finished within about 20 minutes.

For those who don’t care about technicalities, you can skip the next three paragraphs 🙂

Dr. Arteaga-Solis didn’t do everything he had planned, because Benjamin wasn’t tolerating the first device they had put in to view his airways (LMA); they had to change to a smaller scope and couldn’t take cultures of his lungs. The doctor wasn’t concerned about that, though.

They discovered he does have mild to severe tracheomalacia (no surprise) – the trachea walls are floppy from the top of the windpipe all the way down to where the lungs split.

Also there were extra secretions in the lungs, but they were clear, so it wasn’t a concern. One of the possible reasons for this is the fact that he does not clear his airways well on his own (due to the tracheomalacia).

Anyway the chest PT is helpful for him, and thankfully it’s one therapy that Benjamin actually enjoys :).

Then the doctor gave us “what you might consider a strange request.”

This November, for the first time, I decided to participate in the Facebook tradition of sharing a daily thanks-giving post.

It’s November 11th and I’ve only shared one post. Everything I wanted to share after the first post felt a little pathetic, when I imagined saying it publicly.

These blessings mean a lot to me, but one can only share so many ‘deep’ posts –

“I’m thankful Benjamin can eat puréed food,” “I’m thankful he’s moving around so well,” “I’m thankful I can play with my kids instead of pumping all day,” –

that’s the first reason I didn’t post.

Although I do have many more-basic reasons to thank God.

Here is the second reason – it may be taking things a bit far, but I’ve always felt that when someone shares a deeply grievous status, it’s appropriate for me to keep a day of silence for them.

I know people mean well, and I don’t fault them, but when I shared about my young cousin’s death and saw people first comment that they were praying for me, and then minutes later post about the fun time they were having with their family, it seemed … I can’t think of words to explain it.

This week two young mothers have entered the presence of Christ.

One died of cancer and left a six-year-old behind; the other was shot in her house. She was pregnant and also left behind a husband and a one-year-old.

I’m thankful for the eternal hope we have and for the comfort only God can bring to these families. Words seem trite right now.

That is why I’m silent this week. Praying for their families.

We’ve never made a huge deal of the first birthday – only a small celebration – but in the culture where we’ve been serving, the first birthday calls for a feast!

Our sweet, elderly coworker explained to me a few years ago that in that country, for a child to live through the first year was tremendous. Now, I understand.

Yesterday, I decided to read what I wrote in my journal on Benjamin’s birthday last year. When I skimmed through my notebook, I realized I didn’t write anything on Benjamin’s birthday – for obvious reasons. 🙂

Here are a few snippets from later that week.

We are overwhelmed by God’s grace, mercy and love for us. He has answered so many prayers […].

Right now I’m exhausted- the last few days have been a whirlwind of unexpected, overwhelming circumstances; decision-making (or decisions yet to make […]); and overwhelming reminders of our merciful Savior’s love. […]

We are so thankful He has chosen to give us Benjamin to enjoy for this long. I treasure every breath he takes, every touch, every look, every moment spent with him.

[Reviewing] Day Two (Aug. 10)

It was just me and Jason the first time I saw Benjamin. […] After a while I asked the nurse if it was okay to hold him. I wasn’t expecting her to say yes, but figured I’d ask and she agreed that I could.

They had gotten me a chair that sat higher up so I could sit beside his bed and still see/touch him. The nurse maneuvered a few wires, wrapped him up warm and placed him in my arms.

How beautiful. Some moments cannot be expressed in words […].

Thank You, Father, for this beautiful gift – for this one of many blessings – to hold my baby the first time I saw him.

I shared several posts out of order, but from here I’ll attempt to go back and review challenges/blessings of his first year in chronological order. We’ll see how that goes. 🙂

Well, the drive to Manhattan was a fun family adventure at least! 🙂 It was a beautiful day, and the gift I bought Jonathan for quiet times arrived in the morning. It helped to have that during the appointment.

After dropping me and Benjamin at the hospital, Jason found one-hour-parking. He and Jonathan waited until I was with the doctor to come inside.

Side note- I found it interesting that the form asks if your child has been exposed to mold, pets, or stuffed animals.

Preliminary Questions

Benjamin has a new excited “gasping” sound, accompanied by a “honk.” (Any intense breathing – cough, sneeze – has a “honk” with it).

He made his excited gasp as soon as I brought him into the pulmonologist’s office, and then he apparently realized how cool it sounded… because he did it the entire time we were there. 🙂

The pulmonologist inquired about his breathing, his swallowing/eating, and whether his wheeze (when sick) was a “breathing out wheeze” or a “breathing in wheeze.”

Benjamin drank his bottle while I was talking to the pulmonologist, so he heard how congested Benjamin sounds when he drinks.

When Benjamin was smaller, he always sounded congested during and after feedings. Now it mainly happens after he’s had a cold.

Here’s what the pulmonologist suggested…

1. Benjamin should have chest pt.

While the pulmonologist listened to Benjamin’s breathing, he had gently pushed on Benjamin’s tummy; he heard a slight wheezing sound, which indicates narrowing at the site of the repair.

When we get a cold, most of us are able to clear the mucous on our own, but because Benjamin’s esophagus is narrower, the mucous can get stuck at the base of his throat. If he can’t clear it, then it can get infected. Thus the chest pt.

This only entails one appointment, where the therapist will show us how to perform chest pt properly. The doctor also gave us a prescription for a CPT Cup, since adult palms are “a bit large for a baby’s body.”

2. He suggested that Benjamin get a bronchoscopy, which can be done at the same time as the ENDOSCOPY. He may also have a swallow study done.

Basically, one test looks at the top portion of his esophagus, the other looks at the bottom portion and at the stomach. The swallow study would observe through live video how well he drinks milk and whether any gets into his lungs.

(I don’t have Benjamin’s medical folder with me at the moment, I may tweak this later. Anyway you get the idea.)

Follow-Up

Jason took Jonathan to the car while I made our follow-up appointment and got the papers for physical therapy.

I met one of the sweetest receptionists!! She gave me the papers, then gave me directions and the therapists’ names. It was thoughtful of her to give so much time to one patient.

We didn’t get to ask as many questions as usual, but we’ll see the surgeon on August 26th to discuss each test in more detail.

A Trip To The ER

On Sunday, July 19th, we took Benjamin to the Emergency Room at Columbia Presbyterian Hospital.

Saturday morning he had a runny nose. Saturday night he woke up extremely uncomfortable,

And Sunday night, we found ourselves ‘sleeping’ in the ER…

We were moved to a room on Monday night, and stayed in the hospital until Thursday.

To those were praying for us during that time – first of all, thank you. It means a lot to read your comments and to know how many people support us through their words and prayer.

Secondly, I want to share where we go from here.

We’ve learned to ask each doctor the same questions. Each specialist comes at the situation from a different angle, and we get a more well-rounded explanation that way. (I have to say, we have been very impressed by Columbia Presbyterian Hospital.)

Here is the plan for Benjamin this month.

1) We’ll see a pulmonologist on Wednesday, August 5th to examine Benjamin’s lungs, and to determine whether or not he has tracheomalacia. (Somehow, even after talking to many doctors and two different surgeons, I had the impression that all TEF patients have it.)

2) We will see the TEF surgeon later this month to discuss whether he needs an esophagram or dilation.

Our understanding is this: Benjamin may or may not need 2-3 different tests on his esophagus.

Three Different Tests

One will be determined by the pulmonologist.

The other test will show whether Benjamin needs his esophagus stretched. They’ll check for scar tissue at the repair site, how he is doing with acid reflux, etc.

Both of these tests would require anesthesia, but the doctor told us that those two tests can be done at the same time.

The third test, which may or may not be necessary, will determine how he does with swallowing milk/food.

Please pray for wisdom to ask the right questions and for clear communication with the doctors. It would also be wonderful if he didn’t need anything requiring anesthesia again.

Jonathan (my toddler) and I have been alone all morning, which is unusual.

I wanted to get a lot of household tasks done before my husband/baby come home, but at the same time I wanted it to be a special time for Jonathan. He gets much less attention from me now, with Benjamin’s medical needs.

Usually I’ll put on a show for Jonathan when I need to clean the house, but this morning I realized he’s old enough to enjoy helping me start the laundry. (He’s “helped” me fold it before, but not with washing.)

He loves anything mechanical, so I thought he’d like seeing how it works.

First, we sorted – turns out he knows the difference between “light” clothes and “dark” clothes. Yay. 🙂

Then I lifted him up and showed him how to turn the knob. It was fun watching his excitement when he pulled the knob and the water came on.

After we poured in the (natural) detergent, I lifted him up and let him put the clothes in. It took a few minutes longer than usual, because I had to pick him up for each shirt/pair of pants, but we had fun…

…Until I had to explain that we can’t wash ALL the clothes at once. He didn’t quite understand why we had to stop when we still had a few clothes left. 🙂

Then – after he cleaned up his Legos – we did a scissors/glue project, some “painting” (actually just special markers “Grammie” gave him for Christmas), and he played with play dough.

Jason took a scenic route we hadn’t taken before.

As we drove up the hill, with the pink-flowery trees encompassing us, Jason glanced at me, and said, “What’s wrong?”

I was trying hard to fight back the tears. This was supposed to be a day to celebrate.

I started crying and said, “Everyone can’t wait to find out if it’s the gender they hoped for, and we have to tell them the baby’s not normal.”

Jason talked about how this baby is God’s gift, and everyone will celebrate that with us. Somehow God gave him the right words at that time.

I’m glad we waited to find out the gender. It gave us time to process the difficult news and celebrate the “gender reveal” separately.

Neither of us could wait to find out the gender. When we got to the Women’s Center, sitting in the parking lot before our next appointment, I handed the envelope to Jason.

I let him look first. He smiled, then handed it to me.

The sonographer had written it in the middle of a sticky pad, then bent up some of the pages.

Inside the yellow sticky pad, it said, “It’s a boy :-).”

It had been rainy, so the sky was gray. We enjoyed our simple celebration together – that’s our style. 🙂 Then we went into the Women’s Center for our next appointment.

Follow-Up with Our Midwife

We had an hour or more with Peggy and some of my other nurse friends (I knew them from our first baby).

The same day we found out our baby had clubbed feet, we got to talk to our midwife, asking all the questions we could think of. It helped us to start processing what we had found out.

All these things just “happened” that way. Getting to know the nurses before the first birth… having our follow up the same day… deciding not to find out the gender until later… decisions that aren’t “typical” for us.

We had another four months of weekly sonograms, new concerns and questions, but looking back, it’s sweet to see how God let these little things “happen.”

Silence

I reclined in the dim sonogram room, with Jason sitting in a chair next to me.

We both watched our baby on the screen in excitement, as the sonographer pointed out the different —

no wait, this tech didn’t point out anything.

She was silent the. entire. sonogram.

It was awkward, but I figured, maybe they aren’t allowed to say anything.

We had asked her to write down the gender on paper, so that we could find out the gender together later. We couldn’t wait to know whether it was a boy or a girl.

As we waited and watched, Jason leaned in close to me, and said, “Hey, we haven’t agreed on any boy names yet. What will we name him if it’s a boy?”

I smiled at him and said, “Benjamin?” Jason had thought of the name earlier in the week. He smiled. “Oh yeah, Benjamin. I like that name.”

I tried not to be nervous by the tech’s silence. She finished the sonogram, then said, “I have to go get the doctor.”

I didn’t remember a doctor being called after our firstborn’s 20-week sonogram.

When The Doctor Came

A young female doctor walked in, smiled awkwardly, then said, in a kind but distant (professional) manner,

“There are two things we’re seeing. The first is that your baby’s feet are clubbed.” (She gestured with her hands.) “The second is that the stomach bubble didn’t show up on the sonogram. We’re not completely sure what this means yet…”

She explained that normally, when the baby swallows amniotic fluid, a bubble will show up on the sonogram. That’s how they find the stomach on the sonogram.

“We’re hoping it’s nothing. Maybe the baby was asleep or didn’t feel like swallowing. Just to make sure, we’d like to schedule another sonogram for next week… We’d also like to do an echocardiogram next week […] Do you have any questions?”

Questions. Hmm. Where do we start?

“What are clubbed feet?”

“Will he be able to walk?”

“How severe is it?”

“What do they do to correct it?”

We’d never even heard of clubbed feet before. My first visual image was that the feet were 2x the normal size and possibly had no toes…

“It means they are turned in. We won’t know the severity until he’s born. Sometimes sonograms are wrong… That’s what we’re hoping for with the stomach bubble.”